Have you had a remission?

[justy]

Hi all, ive been thinking for a couple of weeks about something someone else said on the forum - that they have found it useful to find people with a similar progression or "type" to them in order to hepl each other out, exchange info etc.

I have also been mulling over the long remmission that i had, as i have plenty of time for mulling.
I first became ill about 16 years ago - then again i may have been ill since a teenager when i had glandular fever - its hard to tell really. It appears to me like very gradual onset, but again hard to really tell. I was very ill for a couple of years and then i just got gradually better until i was living what i considered a normal life for about 10 years. Then 2 and half years ago i caught measles and have been very ill ever since - much more ill than the first time.
I suppose im interested to hear from others who have had remissions and then become ill again. What complicates things further for me is that i now think that during my remission i still had M.E, but just mildly. I always presumed i was just a bit unfit or weaker then others for some unknown reason. In the years of my remission i was always trying to get fitter but couldnt seem to. For example no matter how many days in a row i walked up the hill pushing the pram i still thought i was going to die when i got to the top. I have only recently realised that this kind of thing is not normal and that most people who put the effort in that i did end up really fit and with great health.
So thought on remissions please- anyone had one or two? anyone have any clue how or why we have them? any ideas how this ties in with XMRV?

xx Justy

 

[Esther12]

Never had a remission. I'd always assumed that if I got better I'd stay better. The idea of relapses etc sounds like an extra nightmare I'd not considered.

 

[justy]

Sorry to be the one to hit you with it Esther. I really thought the first time that i was completely cured, but i have heard of lote os people who either continue to have symptoms or have to be very careful or who like me end up very ill again. Im quite convinced now that i may never be 100% again and that whatever level of recovery i acheiev it could all be taken away again.

 

[Esther12]

Sorry to be the one to hit you with it Esther.

Nah... it was something I noticed a while back on this forum.

I've never spent time on a CFS forum before, so I think I picked up a lot of things when first coming here.

I'm still hopeful for 100% recovery! Hopefully we'll all be fit as a fiddle soon.

 

[justy]

 

[velha508]

Hi,

I've had a remission, didn't realize I had CFS or the remission at the time though. My first case was mild and occured when I was ~21, I believe it was brought on by a toxic antibiotic. Anyway, at the time I was a student living far from family and didn't really have much to do, besides school, but rest, so I did. I would sleep 12 h a day and could never work as hard as the others I was in school with, just didn't have the stamina. I would also have occasional episodes of air hunger, this lasted for several months. At the time I thought, well, I just need more sleep than others...

Without many responsibilities, I just gradually got better over about 3 years. The biggest indicator of this was my sleep needs which returned to a normal 7 hours a night. I never pushed myself during this time.

When I was "well", I often worked out and ran. I also, as you noted, conditioned very slowly or not much at all. I've noticed this my whole life. I would work hard, regularly lifting weights, etc., but I just didn't build much muscle no matter how hard I worked.

My second onset of CFS was slow and I'm not sure of the cause, though I think it could be related to a surgery and possible exposure to nitrous oxide anesthesia. I slowwwwwly, over about 7 years became more and more fatigued. I lost energy to do much of anything, I worked (a desk job) and never did much else. My husband shopped and cooked etc. My slow onset got much worse following a pregnancy, but I was still functioning. I then was re-exposed to another antibiotic in the same family (fluoroquinolone) as the one that caused my first episode and my decline quickened.

I started to experience MCS and within a month had an anaphylactic response to an antibacterial chemical found in soaps. I took prednisone for this and that just about finished me off. I again slept 12 h a day, within a week of the prednisone I began having heart palpitations (like from over exhertion) just from carrying my child into daycare. I had a lot of symptoms that I don't even remember now (I'm better).

This was a couple of summers ago. Thankfully I found this and another forum and read Rich's amazing theory -

http://aboutmecfs.org/Rsrch/GSHMethylation.aspx

I don't know how so many people visit this site and do not see how obvious it is - the root cause of CFS is mitochondrial dysfunction - this dysfunction is what causes the symptoms, fatigue, neurological, immunological, digestive, etc. Our mitochondria are our energy source, they make ATP which is used for everything, this is how your body functions. IF you are not making sufficient ATP you will not have energy. Rich's theory explains it all...

Unfortunately, I think that Rich's 'Simplified Treatment' will not be sufficient for most. It wouldn't have been for me. At the same time as I read Rich's theory, I found Fred's protocol. It has gotten me well - from a much worse place than my first episode and in a much faster time frame. It wasn't easy or cheap but it was worth it to get my life back and it is not prohibitively expensive - people who smoke a pack a day pay about the same amount, but they are harming their health...

Fred's protocol includes many additional things that were very helpful to me during healing that the simplified approach did not (Rich's study, did prove a point, but there are limits to what can be looked at in small clinical studies such as his - individuals don't have those limitations) - in particular I found I needed adenosylB12 (another coenzyme form) and carnitine fumarate....

This is the protocol I followed. I don't intend to stop following it and I don't intend to have an end to this remission. I feel better than I have in years.

http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131

Discussion thread:
http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1087

If you spend the time to read Fred's protocol and around the forum that people following it use, you will see that some reactions to these supplements are expected and are actually a sign that you need them. Prior to finding Fred's protocol I had taken some methylfolate and mB12 and it literally felt as if someone plugged me in and turned me on - like everthing was sparking back to life all at once...

Reading the active B12 basics and the discussion thread will tell you all you need to know, you need to pay attention and read and re-read, it will sink in...if you want any more info on this let me know. I'm willing to share all the details of what I went through and where I am now...one thing I continue to struggle with is food allergies and dysbiosis, but it is hugggggely improved over where it was a year ago and I am hopeful to have it fully resolved soon...

Good luck,
Velha

 

[SOC]

My daughter spent a large part of the first 4 years of her illness "in remission". She apparently recovered from the original flu-like illness, but would have crashes, probably triggered by a flu virus or other infection which would knock her down for 4-8 weeks (pain, fatigue, cognitive issues), then she would be apparently symptom-free for months at a time. It seemed that each episode was worse and longer, but she gave every appearance of being fully recovered in between.

Then she was given a live-virus chicken pox (a herpesvirus) vaccine. She hasn't been in remission since (2 years).

I never fully recovered from the original flu-like illness we both had, and have not had a remission.

My guess: my daughter's immune system was slowly weakening, so she could fight off viruses for a while but each time it was harder. The original underlying virus was probably getting stronger. The live herpesvirus vaccine probably so overtaxed her immune system that it could no longer supress normally latent viruses. I suspect that's when the HHV-6 reactivated. She is recovering with Valcyte, but is not in what I would call remission, yet.

I think my immune system was not as strong as hers when we first became ill and so I never managed to fully supress whatever virus it was we contracted 6 years ago.

 

[justy]

Thanks for the responses...so far.

@Velha - reading your story felt so much like mine. Different specifics but very similar in tone. Yes conditioning was a big problem for me, evgen though i would swim regularly, walk long distances etc i always spent a long time recovering and never could get really strong and muscular (and slim, but thats a different story i guess)
I have been following Richs methylation theory with interest, i had Mitochondrial testing done with Dr.Myhill in the U.K and have a problem with making energy as well as severe deficiencies in the usual suspects such as carnitine, selenium, glutathione. I have high oxidative stress levels and high cell free DNA as well as many blocks, which could be chemicals or metals etc sticking on to my DNA. I have had moderate MCS since i was a child and this has got worse as i have got older.
I am trying to read up on Fredds protocol - im struggling to understand it. I have been taking (among others) Vitamin C and selenium and Methyl B12 Sublingual spray. Im a bit concerned because the spray has had no effect at all so far - good or bad. I havent been using it long though.

 

[Cloud]

Never had a remission. I'd always assumed that if I got better I'd stay better. The idea of relapses etc sounds like an extra nightmare I'd not considered.

I've seen these remission stories for some time and have to agree with feeling freaked out by the idea that getting completely well, may only be temporary. But still, I'd love a remission even knowing it may only be temporary.

I've never had a remission....only a gradual progression of the disease with it's ups and downs for 17 years now. The progression was accelerated mostly due to my lack of understanding of how a continued push-crash cycle would cause disease progression, until I eventually crashed into a 3 year abyss of severe bed bound illness.

justy, I think that's a great idea to connect with people who have like stories. You may very well gain some insights. But unlike you, for myself there is no doubt about my point of onset because prior to that time of becoming seriously ill, I had for many years been extremely healthy...cross country runner, etc. It was like night and day going from a very vital and healthy person, to being sick with an illness that never got better....in fact, worse over the years. September 1993, I put a Hep B Vaccine on top of an already stressed immune system and, I've been sick since. I now believe that latent xmrv activated at that point of immune trauma and eventually got the upper hand over my immune system. Currently, I have the upper hand over the opportunistic infections (thank you Dr P), but I tiptoe around the xmrv hoping it will behave until we know more.

 

[justy]

@ Sick of CFS. I hsve spoken to other people who had a progression like your daughters, with periods of ill health coupled with short remissions in between. My duaghter has been experiencing a similar illness for the last 2 years. She hasnt had an M.E diagnosis as she also has More severe GI problems - but after 2 years and having to leave school she still has no diagnosis.

@ Cloud - yes i also have managed to keep the infections at bay for about a year now - before that i was to scared to leave the house unless i caught something nasty and ended up in bed again.
I live in hope that a full recovery is possible for all of us, including those that have had long remissions and been ill more than once. Even though i know from bitter experience that it can happen twice i still dont really want to believe it myself.

 

[free at last]

Interesting disscussion Justy, something i became aware off just recently reading another of your discussions here,
http://forums.aboutmecfs.org/showthread.php?9306-new-symptoms-emerging./page2

A while back i started getting very itchy irratation in one eye in the mornings i would notice it a lot, i couldnt realy easily explain what it felt like, and couldnt figure out how to explain it to my partner. Then upon reading such said other discussion about Sjogrens Syndrome, i googled it. Then Wham the eye irratation was described like grit in the eyes. And that is exactly the feeling i have been getting recently, but reading it, seemed to explain the feeling much better than i did to you, on my reply to you, on the thread ive linked above, that you started.

I also get the dry mouth a lot. and a lot of the other symtoms joint and muscle pains, But of course it appears more complicated as i also get PEM not sure if pem is part of that syndrome as we know it is ME/CFS ?

So i got to thinking what causes Sjogrens Syndrome. and one theory is a virus could fool the immune system into attacking the glands of the body producing a auto immune disease and Sjogrens Syndrome.

Now ive tested positive 3 out of the four methods for xmrv by the WPI and NCI, so could XMRV both cause ME/CFS ( the PEM problem ) as well as Sjogrens Syndrome ? I have no idea, but when the swine flu scare is lower im going to be going to my doctor with this information and hopefully will learn something interesting.

So indeed Justy these kind of discussions really can teach everyone of us new insights into what is happening in our bodys. sometimes our guesses will be off, but occcassionaly just once in a while, maybe some of us will really learn new things, i for one know i am, i hope others are too.

As far as remission goes, you know my story. but ill update if it applys to all of us, which it might because of the xmrv ME/CFS immune symptoms.

recently i seem to be getting more PEM, twice in about the last two weeks, ive suffered symptoms from haveing brief walks ( something that wasnt happening last summer ) the symptoms or crashes still seem to vary in strength, the one before this one, (i felt symptoms mildly start last night ) was the worse of the two. moaning in my sleep feeling quite off, fluey feelings ( but very very mild compared to flu ) this one i would compare as about half that strength, fairly normal, but very tired fatigued slightly brain fogged and aching. the exhausted feeling we all know, wanting to sleep all the time.

Why this is now happening i have no idea, but its kind of happened in the past, then suddenly ill seem to snap out of it, and have another long remmission lasting say two or three months. But ive become aware that even during those longer good periods, i know this thing is not gone, i know it will be back, and more than that im sure im still getting symptoms but of a strength that is say continuesly very mild. but the symptoms are really still just under the surface ready to strike stronger at any moment.

I did a lot of activety in the summer, but because of the flu around, ive not been doing any for many weeks, and it feels like this is once again sensetizing me to react to excercise and produce the PEM flare ups, that i was getting many years ago. How i counteract this i have no idea, maybe a very gradual graded excercise routine to desensetize the PEM might be the answer ? im considering using all the supliments i did many years ago, that may or may not have helped recovery, including maybe anti deppressents, as for the moment it feels like im actually going down hill again, just when i think that, i get another longish period of better health, but the last two PEM attacks ( mild or not ) were so close together, that is how it starts isnt it, untill its almost every week, or every other week again.

The illness is just disgusting the way it tricks and confuses. and seems to have a mind of its own against patients, i hate it with all my soul, it might be possible based on what i learned just recently my immune system might be attacking my glands producing either Sjogrens Syndrome, or a type of secondary version of it, with the primary cause being xmrv. Those with disorders like this, i cant help feeling that yes recovery of sorts can happen ( and sometimes for quite long periods of time ) but a complete cure, i just dont know, i dont belive it, i think that some, are going to have it, off and on ( if yours is the relapsing remitting type ) untill we die.

I just hate it, recently im also getting a stomach pain that keeps coming and going, im hoping its a ulcer, but of cause im worried about cancer, but i dont know, and am too scared to even go to the doctors yet for fear of dieing from swine flu. Not sure if any of this info is helpful to any. but i didnt know about Sjogrens Syndrome. I wonder if Judy has cases of it ( or a similar auto immune problem ) with xmrv patients, now thats a intertesting question. i wonder if its relevent to more here ?

 

[Jenny]

I had a 12 year remission after 6 years of quite severe symptoms. But as you say Justy, I always felt there was something still there beneath the surface. Most of these 12 years I was quite fit - worked full-time as well as bringing up two children as a single parent, went skiing, played badminton etc. But I didn't have normal stamina, and every few weeks I'd have a couple of days of mild symptoms.

I went into this remission while having colonic irrigation, acupuncture and Chinese herbs but they may have just been coincidental to recovery.

8 years ago I started to get worse again after a minor skiing accident, and I've been going downhill ever since, with my worst period ever during the last 18 months. I now get a lot of pain which I didn't have during my first bout of illness. As free at last says, this thing has a mind of its own - my life was much less stressful when I started to relapse, and I'd just got remarried. I wasn't overdoing it, and hadn't had any vaccination or infections. The skiing accident clearly had something to do with it though, and I was diagnosed with fibro after that.

Personally I think it's unlikely now that I'll ever be completely well - I'm 60 now and first got ill 30 years ago. But I hope for improvement again.

Jenny

 

[Cloud]

I had a 12 year remission after 6 years of quite severe symptoms. But as you say Justy, I always felt there was something still there beneath the surface. Most of these 12 years I was quite fit - worked full-time as well as bringing up two children as a single parent, went skiing, played badminton etc. But I didn't have normal stamina, and every few weeks I'd have a couple of days of mild symptoms.

I went into this remission while having colonic irrigation, acupuncture and Chinese herbs but they may have just been coincidental to recovery.

8 years ago I started to get worse again after a minor skiing accident, and I've been going downhill ever since, with my worst period ever during the last 18 months. I now get a lot of pain which I didn't have during my first bout of illness. As free at last says, this thing has a mind of its own - my life was much less stressful when I started to relapse, and I'd just got remarried. I wasn't overdoing it, and hadn't had any vaccination or infections. The skiing accident clearly had something to do with it though, and I was diagnosed with fibro after that.

Personally I think it's unlikely now that I'll ever be completely well - I'm 60 now and first got ill 30 years ago. But I hope for improvement again.

Jenny

Wow, 12 years in full remission, then relapse! That's an amazing and perplexing story and must have been very disillusioning and disheartening....true I guess for all of you who experienced these long remissions followed by a relapse. Bizarre how a disease could allow one that much of a reprieve only to come back years later with a vengeance.

With all these kinds of stories it seems prudent to continue to manage ones life as though still having a disease, even if in complete remission. But as you say Jenny, you didn't really have any triggers that should have awakened the monster. A mind of it's own for sure. Brutal.

I'm also concerned about these pain stories. I hear often of pwc's who didn't have any pain until years into the illness. I've never had pain until recently. My flares now involve pain but so far it's mild and tolerable. I just hope it doesn't progress....The rest is enough to deal with without pain. Plus, I refuse to take narcotics.

 

[Live And Let Die]

I've been sick for 10 years although the more I think of it, I can recall cognative problems another 5 years earlier. I had one remission so far that lasted about 3 months (about 6 years ago). I was working construction oddly enough and it was the dead of winter in Massachusetts. I think being out in the cold might have strengthened my immune system. Anyways I was in top shape (3 sheets of plywood at a time up a flight of stairs), sleep was great and refreshing ect.

Then one night I drank a lot, woke up the next day like a mac truck hit me and haven't felt good like that since.

 

[SOC]

@ Sick of CFS. I hsve spoken to other people who had a progression like your daughters, with periods of ill health coupled with short remissions in between. My duaghter has been experiencing a similar illness for the last 2 years. She hasnt had an M.E diagnosis as she also has More severe GI problems - but after 2 years and having to leave school she still has no diagnosis.

I'm SO sorry to hear that! It's heartbreaking to watch a child go through this.

FWIW, my daughter (before the live herpesvirus vaccine) could shorten her episodes and in general was healthier when she was on the Pall/Ziem Protocol. There was a link on the Phoenix Rising homepage under Treatment Plans, but it's broken at the moment.

After the vaccine, the protocol helped, but couldn't help her back into remission again. I'm guessing once HHV-6 reactivated, it was dominating her symptoms until she was treated with Valcyte.

 

[Sean]

While I have had various ups and downs in my 25 + years with ME/CFS, sadly I have also never experienced anything vaguely resembling a remission.

 

[Mark]

I've been sick for 10 years although the more I think of it, I can recall cognative problems another 5 years earlier. I had one remission so far that lasted about 3 months (about 6 years ago). I was working construction oddly enough and it was the dead of winter in Massachusetts. I think being out in the cold might have strengthened my immune system. Anyways I was in top shape (3 sheets of plywood at a time up a flight of stairs), sleep was great and refreshing ect.

Then one night I drank a lot, woke up the next day like a mac truck hit me and haven't felt good like that since.

This is a very interesting observation, Nico's Dad (welcome to the forums! )

Reminds me of this recent thread of Cort's...just in case you hadn't noticed it...

http://forums.aboutmecfs.org/showthread.php?9432

 

[justy]

Jenny, yes another similar story, although i couldnt ever work full time, but then i was aq full time mum to 4 and worked 2 days and volunteered - so i would think that was the same as working full time. I really felt quite recovered for 10 years.

Its interesting to note that so far those with long almost complete or complete remissipons still felt something was off and couldnt get very fit or have really good stamina. I wonder now ho many of us with long remissions have tested XMRV positive, or if this is even possible.
I havent been tested, i am waiting for some of the issues to be ironed out, plus not easy to get tested from here, but i strongly suspect i will be positive.
My other thoughts now are that remission is really only ever partial, the disease is still there undermining and waiting to pounce. But on the other hand my life was pretty much normal, i was just never going to be an athlete or run marathons (or get that perfect body lol) so i would take that over how i am now any day.

 

[ukxmrv]

Justy, I have never had a remission. Acute viral onset and then complete hell for over 27 years.

My sister on the other hand was ill for 5 years and then slowly surfaced to an almost remission. She can now work part-time, do a little exercise but not much, sleeps and rests a lot. The alcolohol intolerance stayed with her.

The difference was that her onset was not viral or acute, she did not try any exercise programs, rested and did not work. She didn't have viral or allergy symptoms through the 5 years and was largely fatigued with severe PEM. We couldn't see any reason for her illness, except that I had visited her for the first time in many years.

My Mother has now come down with something similar. Once again after a long visit from me and a major operation. Still fatigued, with PEM and brain fog/pain.

XMRV+

 

[grant107]

I was very sick for 7 years and went into a remission for 5 years. While in remission I still knew I had the illness because if I was on my feet for more than 2 hours I would have PEM for about 24 hours. I considered myself in remission because I could live a normal life as long as I was careful about certain activities. For instance, I could play golf as long as I didn't play 2 days in a row. My remission ended when I had a hysterectomy.

It has now been 11 years since my hysterectomy and I continue to be very sick. I plan to try the arvs soon as I am xmrv+.